Thoughts on Pudendal Neuralgia


From Prof. Thierry Vancaillie, MD, Pudendal Neuralgia Specialist, Australia ~

“Firstly I think that we still do not have the perfect schema for diagnosing PN vs PNE at this stage.

A lot of patients will have symptoms consistent with PN, but may not actually have PNE. Conversely a lot of patients will have PNE but will be lead to believe that they have myofascial PFM dysfunction, and thus they will embark on lengthy sessions of treatment often by a practitioner who practices either by him/her self or in a practice with like trained and like minded clinicians. This can lead onto months of treatment which may not be that helpful and in fact may be quite painful & actually inappropriate for someone who actually has true mechanical entrapment at the level of the sacrospinous & sacrotuberous ligaments. This is not to say that someone with PNE will not also have myofascial changes in response to their pain , of course they will , but there may be a limit to the level of benefit that a purely myofascial approach can bring.

Ideally a patient would be seen in a setting which has a pain medicine physician, PF physiotherapist, osteopath, acupuncturist & clinical psychologist all experienced in PN, its presentation, assessment & management. This should be supported by good quality & diverse diagnostics, i.e. PNB, Neurography, MRI etc.

All patients cannot be managed by a formulaic approach as all have different anatomy, physiology, contributing factors & responses to treatment. Thus, surgery is not for all; a purely myofascial approach is not for all; and a purely medical approach is also not for all. It really depends on the patient's presentation, the findings on diagnostics (not just one diagnostic) and their response to past treatments - physical, medical, psychological.

Many patients who use the internet may find themselves down one particular path approaching their problem, but may in fact find that they could I be barking up the wrong tree!

There is so much that we still do not know and still need to know to help our patients, thus we still need to pursue research into many aspects of this problem, ideally research would be done in a collaborative, dedicated and open minded fashion.”

Professor Vancaillie responds to questions from HOPE…

Can nerve blocks cause scar tissue and is there a limit on how many I should have?

Nerve blocks can cause scar tissue if there is a significant hematoma subsequent to the injection. This is rather rare. The nerve block continues to be a necessary diagnostic test. There seems to be more and more reluctance on the part of patients to proceed with a block, and also confusion about the reason for the block. The primary reason is diagnostic. The result of the block tells us how much the periphery is involved in the pain process and how much is central. The block can be of some therapeutic value in cases where the pudendal neuralgia was brought on by a specific event (for instance a vaginal delivery or a surgery) or in the older patient where it appears that adding cortisone to the block may be beneficial.

From Peter Dornan, Physiotherapist, Australia (attendee at the October 2012 International Pelvic Pain Society Conference)~

“The conferences are always stimulating and getting bigger each year as more professionals understand this condition…
Most discussions were centering on symptom (pain relief), understanding how an organism ( us ) with pain responds to stress, anxiety, tension etc. (We react badly -stress exacerbates pain by increasing adrenalin which fuels protective mechanisms in the brain to overreact – particularly with chronic pain). Good role here for counselors, psychologists, pain management experts etc to ‘distract’ us from our pain. Lot less emphasis on surgery this year, more on pain management.

Because pain can set up a chronic inflammatory condition, there was a very good lecture on an anti-inflammatory diet – mainly a Mediterranean and Japanese type.

There was also less emphasis on visceral type massage as being effective, even though there was a good lecture on this. Along these lines, there was a good talk on recognizing the role of fascia as a possible pain trigger – fascia joins every muscle, ligament, tendon of the body. There was at least some recognition that, as the pelvic floor muscles are supplied by the pudendal nerve, should be aware that massaging these may simply inflame symptoms. One speaker noted that pelvic floor massage, done properly, and with care, can relieve the pain, but she recorded it returns within several hours (a sure sign to me she is only treating a symptom – in my experience, TPM and hard pelvic floor exercises can really inflame things).

There was a very good talk by two young male physios from California (doing PhD’s) and who I influenced last year, on pelvic dysfunction for PN pain. I detected a greater interest in more musculo skeletal management this year – pendulum may be swinging a little.

Regardless, one thing is sure, everybody now recognises the great necessity to approach this condition utilising a multidisciplinary team. That will be one of my aims for next year – to set one up in Brisbane.

Peter responds to questions from HOPE…

How long should you try PT before deciding whether to have pudendal nerve decompression surgery?

While symptoms are improving, should continue with PT. If symptoms level out for about three weeks or get worse, then need to re-assess treatment plan, which of course, would include considering surgery. This takes some insight. Because the nerve is often extremely hypersensitive, many seemingly innocuous situations can ‘flare-up” the situation (incorrect postures, exercises etc).

Can PT break down scar tissue?

With appropriate exercises, PT stretches, ‘unwinds’ and re-orientates scar tissue; exercises also strengthens it. Be careful with deep tissue massages or ‘releases’. Because of the complex nature of this disease and the fact that the nerve is often extremely hypersensitive, this can often cause flare-ups, (particularly when the pelvic floor muscles are in spasm – for whatever reason).

How do I know if my PT is properly treating pudendal neuralgia/PNE?

Not an easy question. If symptoms improve, chances are the treatment is appropriate. If they don’t improve, treatment or diagnosis could be wrong – need to reassess.

Do most physical therapists believe pudendal nerve entrapment really exists?

Most PT’s simply don’t know about Pudendal nerve management. They are learning.

How does pelvic misalignment and SIJD cause pudendal neuralgia?

The working theory is as the innominate bone (pelvis bone) posteriorly rotates on the sacrum, it causes adverse neural tension to the pudendal nerve as the nerve passes around various structures – particularly sacrotuberous and sacro-spinous ligaments and Alcocks canal. The nerve may not necessarily be ‘entrapped’ – simply strained, compressed and generally ‘stressed’. This happens during extreme trunk forward flexion movements, jarring the SIJ (stepping on a stair ‘that’s not there’), falls on the buttocks, pelvis etc. The SIJ then heals in this rotated state, where the ligament scars, keeping the nerve on tension. The treatment is to anteriorly rotate the innominate on the sacrum by manipulation and exercises.  It is, of course, possible for the nerve to be ‘entrapped’ if the injury is severe enough – a particular incident could cause scarring around the nerve. (such as a violent pelvic accident or even long hours of sitting incorrectly at a PC) This type of entrapment may show up with special MRN. (MRI of a nerve). PT won’t necessarily help this condition if there is significant scarring here.

From Sherin Jarvis, Physiotherapist, Australia ~

Sherin Jarvis responds to questions from HOPE…

How long should you try PT before deciding whether to have pudendal nerve decompression surgery?

Internal physio should be tried for possibly 12 sessions or 3mths, preferably in conjunction with external work & medications to calm down nerve over firing However if the physio sessions are too painful & not helping with respect to decreasing pain & improving function, then, may need to re-assess commitment to physio earlier, or may need to add botulinum toxin as an adjuvant to physio to help achieve the goals without the flares.

How soon after surgery should you resume PT?

Patient should see the physio approximately 4 weeks post to reassess PFM dysfunction & start very gentle external stretches.

Can PT break down scar tissue?

I do not believe that we have the evidence in the research literature to support or refute this, but a scar can be massaged to improve its mobility.

How do I know if my PT is properly treating pudendal neuralgia/PNE?

Ideally your physio would be working as a member of a team of health professional with diverse approaches and all experienced in PN and not working in isolation.

Many thanks to Prof. Vancaillie, MD, Sherin Jarvis, and Peter Dornan for responding to these questions!